Monthly Archives: September 2008

First up, the big news is that due to Abbie’s recent (and ongoing) cold, we have delayed her hip surgery. The new tentative date is October 13. The surgeon wants her lungs to be completely clear for two weeks pre-op, so please pray that they would dry out and heal. The appointment with the surgeon yesterday gave us time to ask lots and lots of questions, with the result that I am now even more excited thinking about the outcome for Abbie. This is a huge undertaking, to be sure, but one that is not optional. So, we must focus on the bright side, which is brilliant when you think about it. She will be able to stand easily, she will be able to pedal a stationary bike (with assistance), and most of all, she will be comfortable!

That’s the “bottom line up front” update, but what I really want to write about is what has happened in the days leading up to that appointment. The harder I am pressed, the more Christ intercedes on my behalf. Just when I think I can’t bear the suffering, I am released, renewed, reminded.

Genevieve had to go to the Philippines last week on short notice. This gave Abbie and I a lot of time together, and many fun events filled the days. I had volunteered to help the twins’ classes tie dye T-shirts last Friday. With them short of helpers, I didn’t feel I could back out just because I didn’t have nursing. So, Abbie tagged along and was thrilled to be immersed in the chatter, laughter, and energy of excited sixth graders. She was so proud to be at her big brothers’ school, and so pleased to see her boys in the middle of the day. The other parents were so kind, as were the boys’ teachers and classmates. There are days I don’t have the stamina or heart to be different, to tell the story, to answer the questions…but not that day, it was an absolute joy not to feel limited by Abbie’s injury but to seize the chance to participate anyway.

Saturday evening we went to a birthday party with a pirate/Pocahontas theme (the back story is hilarious but way too long to tell). All the kids really got into the Native American thing, creating tribes, speaking with accents, and coming up appropriate names. I almost cried when the two oldest girls, Jamie and Keiko, approached Abbie and I and said, “We’ve come up with Abbie’s Indian name…Blooming Flower!” I could not have thought of anything more appropriate if Pocahontas had been there to help me. Abbie grinned at me every time I called her that, even as she was later falling asleep in her bed. “Blooming Flower” indeed! Makes me wonder if her name in Heaven will be “Blossom!”

Monday night, however, the reality of the looming surgery set in as I prepared notes for the physician and jotted down all my questions. Even with all we’ve been through, what we’ve learned of God’s faithfulness and the kindness of people, the thought of anything happening to Abbie still shakes me to the core. I held it together until everyone else was in bed, then Abbie and I opened a big box that my mom had sent to “Princess Abbie.” Inside were many colorful, soft, beautiful hospital-style nightgowns. Granny wanted make sure Abbie had a full wardrobe for her time in a cast. Already in tears by this point, I then pulled the most beautiful quilt out of the bottom of the box..with scalloped edges and flowers stitched over the design, it is exquisite. I was so overwhelmed with the love packed in that box, that I fell to pieces.

I was sobbing thinking, “This is such a personal, private hell. I cannot bring anyone here with me, I must endure this on my own.” [BTW…what a lie!!] I went to the computer to print out the notes, and there was an email from my sister. We are both so busy we don’t email much, but she just wanted to check in, to see how I was and to let me know she was thinking of me. The tears moved from streams to rivers…even across the ocean my family was surrounding me — my mom’s quilt was hugging me, and my sister’s words were shouting “You are not alone!”

These reassurances continued in very unique ways the next morning. Unable to sleep, I got up and took Abbie running very early. As we rounded one corner I saw a shred of a rainbow nestled into a whisp of clouds. They always comfort me, but this time I stopped in my tracks and really looked at it, imagining where the entire rainbow would be if I could see it. After I started running again, I didn’t think much more about it until I turned the corner at our house. There was the same rainbow…but all of it, shining from one end to the other. It hit me that it was an analogy for Abbie…we can only see, only experience part of her, but she is as whole as that rainbow, we just don’t get to see all of it right now. Someday, we will round a corner, and there she will be — our Blooming Flower in all her brilliance

Renewed by the rainbow and the exercise, I loaded Abbie up to head to the appointment, resolving to replace my dread with hopeful anticipation. We were early (yet another sign of God working in our lives!!), so I stopped at the pharmacy window to buy some eye gel. From behind me I heard, “Is that Abbie?” I turned to see a petite, blonde woman who then asked, “Are you Abbie’s mom?” Heather told me she’d just been on Abbie’s site the night before (probably as I was melting down). I asked how she’d ended up at Abbie’s site, and she replied that she’s been reading it for years…tears filled her eyes as she expressed her gratitude for our sharing this journey. This sentiment always dumbfounds me, as I feel like I am requesting the prayers, grace, and support of you all and giving little in return. But, as we embraced I told her that she was my angel this day, reminding me just before boarding the elevators that we are never, ever alone! Thank you, Heather!!!

The postman has also been a messenger of grace this week, with surprises often filling our mailbox. In addition to the gifts from Granny, Abbie received the latest greatest Barbie movie from Auntie Debbie, and a sweet card and more stickers from her Sticker Buddy, Kathryn Trapasso. These gifts are exciting for Abbie, but the thoughtfulness behind them is overwhelming for her Mommy.

And then there’s this (the patient reader’s reward): We have discovered that one thing Abbie truly enjoys, focuses on, and excels at is prayer. She knows she is doing something important, and after all…she knows the face of the One to whom she prays. She loves to hear the impact of her prayers. One specific boy she’s been praying for for several weeks is named Chance. He’s a fourteen year-old from Maui who was diagnosed with epilepsy last year. Three weeks ago he was surfing with his dad when he had a seizure. He drowned in the ocean. We recieved an email within a couple days, and she went to work right away. I got to meet Chance and his mom last Saturday. I was ASTOUNDED by this boy!! No trach, no G-tube, moving his tongue all around, making expressions with his face and noises to accompany them, moving his limbs. Amazing. He has lots of people praying for him, but I just know Abbie is among the most precious and powerful. You can pray for him too, and encourage his family at www.prayforchance.com.

So….if Abbie can pray for you in any way, please let us know by leaving it in the comments after the postings, putting in the guestbook, or emailing us at varasix@aol.com. Abbie yearns to DO things, and this is something she can do well; please grace her with the privilege of praying for you!

Last Thursday Abbie and I took an evening stroll over to Barnes and Noble. After putting up with my browsing, she was ready for a story by time we hit the children’s section. We’d just settled in when two little girls, one a foot taller than the other, approached shyly.

“Is she paralyzed?” asked the taller one, with the shorter one nodding and smiling.

“Well, sort of, ” I replied, explaining that she had hurt her brain, not her spinal cord, but that it was still really hard for her to move her body. I had them do a little exercise with their hands that let them understand what it is like to be Abbie…they could comprehend my directions, but they could not get their fingers to move. They were so intrigued, and so tender-hearted that story-time quickly became “show and tell” instead.

They asked about Abbie’s switch, so I let them record their voices on it. Abbie was thrilled to have a little girl’s voice saying “Turn the page, please!” They were so tickled to hear their own voices that they asked to read to Abbie.

So, I stood back and watched Abbie make two new friends…who, it turns out are TWINS! And, I thought my twins look dissimilar! They took turns talking to Abbie and talking to me.

“I think she really, really wants to walk…because, look at how much she is moving her legs!” I loved that observation.

I finally glanced over to a nearby bench to see a woman transfixed by what was going on. It had to be the twins’ mother…and she nodded when I mouthed that question.

I stepped over to thank her for allowing her girls to come say “hello” and play with us. As I did, Abbie began to eavesdrop, as she normally does. Whenever the mom would ask a question, Abbie would use her switch to answer before I could get the words out. It became almost comical.

“Does she like ‘knock-knock’ jokes?” asked Tall Twin. I confessed I was not sure, but that I did know Abbie had a great sense of humor. So, they read a joke book together. Tiring of that, Tall Twin went looking for something new, and found a book about the body. She asked for advice about what Abbie would like to read, so I pointed to the sections about muscles and bones, and off she went again.

I did notice that when she was asking for her mom’s input about the reading selection, it sounded like she spoke a mish-mash of French and Polish. “Indeed,” confirmed their mother, “the girls are trilingual: French, Polish, and English.” I would argue that they are equally fluent in a fourth language: Love.

Their mother asked me what had happened, and thankfully the twins were hunting for new books while I quickly explained. As we talked, being occasionally interrupted by Abbie, she was amazed at how far Abbie has come. At one point she looked straight at me and said, “She is a miracle, this girl.” Oh, yes…she is!

Regrettably, it was soon time to go. I learned that Adeleida (tall) and Margareta (short) go to the bookstore often, so I told them to look for Abbie, and that even if I’m not with her, they should just walk right up to her like the friends they now are.

I tried to thank the mother properly, but was not nearly eloquent enough. How to express gratitude for allowing her daughters to take the risk….to risk a mean or offended response from me, having their feelings hurt, or just being ignored? Most little girls make new friends all the time, but for Abbie (and her mother) this was a monumental evening.

We practically skipped home under a pink sky, the stars twinkling in tune with our song. No wonder Jesus said, “Suffer the little children to come unto Me.” Innocent curiousity, unfettered by socialized fear and overpolitness, built a bridge to Abbie that evening. Turns out that little children are the best bridge builders of all!

If you have children…let them risk it, let them build the bridge to someone different…there are precious few crossings for children like Abbie, so let the little hearts lead, and perhaps you will find yourself pounding a nail or two as well!